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‘We thought we were curing people’: Hope dims as ovarian cancer therapy fails test

 

Getting a cancer diagnosis is like being hit by a  Mac truck.  I got mine while walking my dog, at 4:30 on a lovely July afternoon.  At that time I was worried about my 11 year old’s baseball game, and my older sons education, when suddenly, BOOM.

I had been having stomach pain for several months, but my primary Dr seemed unconcerned.  She was not worried enough to light a fire under me to get the necessary tests run.  I was in no hurry.  I drug the testing out for 2 months.  In fact, I was still in the process of testing when she called that day.  “How are you” she asked.  I started babbling about the various Dr’s and tests when she interrupted me and said

“No; I mean about the ovarian cancer”.  

Was that a terrible way to find out?  Yes.  Is there a good way to find out?  No.

I did what any normal being would do and started negotiating.  “I’ve had some strange illnesses; maybe this is something strange too, right”.  For the 1st time in the 18 years I’ve been seeing her, she said what you never want to hear from your Dr.

“I want you to hope for the best but prepare for the worst”.  Sums it up, eh?

Here’s a few facts about  the human side of cancer.

 

1 – We all think we’re immune.   We just do.  It’s human nature.  In the same way we don’t get in our cars every day and imagine that this might be the day we die in a wreck on the highway, we don’t wake up every day and think “this is the day I’ll have cancer”.   I have an impressive family history of cancer.  In fact, almost every death in my family, on both sides, has been from cancer.  Granted, most were older than I, but Cancer – every single one!  Not once, though, did I think, hmmm…maybe I have cancer.  Not once.

2-  The word Cancer will shut you down.  I’ve been through some tough things in my life, including some life threatening lung infections.  None of these felt the same as hearing the words “ovarian cancer”.  How odd it is that we are so unprepared to hear the word cancer.    Half of all women will be diagnosed with cancer in their lifetime, and 1/3 of all men.  It’s as common as the parking lot fender bender, so why aren’t we better prepared?  I’ve been in the fender bender, and I’ve done the cancer thing:  the reaction is 100% different.

3 – Cancer is it’s own world.  A cancer diagnosis will catapult you into a world you know nothing about.  In the span of one short phone call you will be forced to make decisions.  Where to go for treatment, which Dr, which tests, what type of surgery, what type of chemo, second opinion/no second opinion, wait or act.  A whole new word is unleashed.  Even if you are familiar with the medical system, as I was, you are bombarded with information, none of which you understand, and all of which require choices.  There you are, paralyzed with fear, in shut down mode, and you are given choices.   As far as I know there are no choices involved in appendicitis, or kidney stones, or the flu.  They are treated in a certain way, and the Dr will tell you what that treatment is; end of story.  Cancer though, at least ovarian cancer, has several options for treatment.  Here are the words I’ve learned, the decisions I’ve made:

– Full incision, laparoscopic surgery or robotic surgery.  Each has advantages and disadvantages.   Which to choose?

– Chemo before or after surgery?  Sometimes this is not a choice, but often it is.

– Intraperitoneal or IV chemo.  The 1st injects chemo directly into your abdomen, as well as chemo into your entire body.  It is was considered the Gold Standard of care,but the side effects are horrendous.

– Port or no port?  If you choose a port, two ports, one in the abdomen and chest, or just chest?

– Chemo alone or clinical trial?

– Which chemo drugs?

If you are reading all of this thinking no big deal, I could make those decisions, I want to give a visual.  You are sitting in your oncologists office and he/she has your scan up on the computer.  Pointing to each tumor/ascites/swollen lymph node, he is telling you why each one is cancer.  You are looking at your cancer.  He/she is saying “technically, I’m not supposed to say it’s cancer until the labs have come back but……this is cancer”.

You leave the office and all you can imagine is the cancer growing inside of you.  Imagine you had a tapeworm growing in you.  Now magnify it by 1000%.  Every second of every day you are feeling those cancer cells replicate, you are imagining the cell traveling to your lungs, your brain, your colon.  You see those pictures every minute of every day and you understand that this might be the end for you.  And, you are helpless to stop it.

You are thinking:  “Oh my God; I’m going to be the one who died and left her children.  I’m going to be the one who’s receiving line at the funeral home goes on for hours, because I was too young to die, and too many people knew me; knew my kids; knew my life.  I Can Not Do This”.   At least, that’s what I was thinking.

 

I consider myself lucky.  My sister, as a Physician’s Assistant, did all of the research for me and helped me make my decisions.  I decided on the treatment referenced above; the treatment that was supposed to be the best, an almost sure-fired guarantee that I’d be one of the one’s to make it, the Gold Standard of treatment.   I spent 5 months going from my bed to my couch, to  the hospital, to the Dr’s office.  I spent the majority of that time not taking care of my family, but having my family take care of me.  It was humiliating and humbling.

After treatment I spent 3 months in excruciating pain, pain that comes from “bone islands”, a result of  chemo.  Have you heard of that?  Only if you’ve been through chemo.   I spent month 4 trying to figure out how to get a bit of normal back.  I walked on the treadmill, but fell off because I can no longer feel my feet.  I increased my meds because instant menopause no longer lets me sleep at night.  I  tread carefully, trying to add vegetables back into my diet, because the chemo knocked out my digestive system.  I looked at my stomach and wondered how it could ever be the same.

Today, I wake up every day and, if I’m not in a dream-state, I think about my cancer.  I think about the fact that I have less than a 50% chance of being here 3 years from now.  I think about the fact that I had every textbook symptom, but had no idea cancer was even an option.  I think about the fact that I might never see my boys get married, or have children, or, for the youngest, graduate high school.  I think about these things.  Every Day.

I don’t always make it through all of my FaceBook feed.  Some days I avoid it all together, other days I just get busy and tired and don’t get to it.  Today, I didn’t make it all the way through, but I made it to the study posted above.  Today I read that the Gold Standard, the treatment my family got me through, the treatment that changed my body forever but was supposed to save me, is not what they thought it was.   The Gold Standard is not what anyone thought it was.  I don’t have a 50% chance; it is much less than that.

All I can think right now is “I thought so”.  Last December I had a feeling, a vision, a premonition, that I wouldn’t be here this coming Christmas.  I’ve felt it, but brushed it off, because I had the Gold Standard of treatment.

Except……………………. there is no Gold Standard of treatment.

 

 

 

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